A democratic response to health scandals

Repeated scandals and costly reorganisations have shown there is a clear lack of democratic accountability on the NHS, an entity whose GDP is larger than most countries. We need a Health Parliament.

"Following Anna Coote's essay on the need to move to a preventative health system we publish the below proposal, from Titus Alexander, on health parliaments.

The
sound of a bedpan falling in Tredegar Hospital would resound in the Palace of Westminster"
was how Aneurin Bevan, founder of the NHS, expressed his vision of
democratic control over the health service. He did not mean Whitehall
setting floor targets for falling bedpans or collecting statistics on bedpan
utilisation, but that patients needs would be heard by the politicians
responsible for their services. The Francis Report on Mid-Staff
Hospital, Ann Clwyd’s description of her husband’s
death “like a battery hen” in Cardiff’s University Hospital and the “hundreds and hundreds” who have written to her show the tragic consequences of not
listening. “It is a
significant part of the Stafford story that
patients and relatives felt excluded from effective participation in the
patients’ care.” (§1.17, p46) The
public had “no effective
voice – other than CURE – throughout the worst crisis any district general
hospital in the NHS can ever have known.” (§1.23, p47) This is about more than institutions or
culture, important as they are. It is about voice and power: who is heard, who
is silenced and who, tragically, dies from deafness.

Just
14 of Francis’s recommendations refer to patient participation on boards or
inspections, the accountability of commissioners, role of MPs and organisation
of Local HealthWatch. These are useful, but cannot address the profound lack of
democratic accountability and scrutiny in national health policy and provision.
To address this, patients, carers and the public need both a stronger voice at
the frontline, where services are provided, and at the very top, where the
design, priorities and funding for health are decided.

Numerous inquiries such
as Alder Hey,
the Kennedy inquiry into deaths in Bristol
Royal Infirmary and Healthcare for Allinto healthcare for people with
learning disabilities have produced volumes of recommendations for changes in
organisation and culture of health services, yet the problems persist because they cannot be answered by institutional
measures alone.

As part of its response to the Francis Report, the Government and
Parliament should create a National Health Forum to give organisations of
patients, civil society and all other interests in health matters a powerful
voice at the highest level, above the bureaucracy of the Department for Health
and the NHS Commissioning Board, advising Parliament and the Minister on all
health matters.

This paper makes the case for a “Parliament for Health” (or National
Health Forum) and in part two shows how it would work to strengthen democratic
scrutiny and accountability of everything that affects health.

The Francis Report and Ann Clwyd’s experiences are just the latest
horror stories about failures in our health and care services. While every day
thousands of patients get wonderful care and 90% are satisfied with their
experience, too many people have a bad or even terminal experience through
mal-treatment, neglect or hospital acquired infections. More bad news will be
revealed as new inquiries are held, whistle-blowers defy gagging orders and
patients tell their stories.

Our problems in health are much wider than issues of leadership,
management and organisational culture of the NHS. How services are run is just
the most visible part of health care, which includes the way we look after our
own health, how we care for each other and the health effects of work as well
as the food, drink, tobacco and other drugs we consume. Each of these issues present
problems which cost more lives and misery than mismanagement at
Mid-Staffordshire or any other hospital. Funding priorities and the allocation of
resources also raise important issues. We spend about £1,700 per person per
year on health services through taxes, £106bn in 2011. Indirect costs of
ill-health are about the same, another £100bn a year or £1,600 each. Add to that the soaring
cost of personal care, the lack of support for carers and the value provided by
six million unpaid carers (variously valued at £23bn to £119bn), and we have a very complex picture for the
state of health in Britain. If the NHS were a country, its £106bn budget would
make it the55th
largest country in the world, about the size of New Zealand
or Vietnam
in terms of GDP. It would have a seat at the UN (it is represented in the World
Health Organisation, WHO) and its civil service, the NHS Commissioning Board,
Monitor and other bodies, would be answerable to citizens through Parliament. Instead,
it is accountable to appointees answerable to the Secretary of State.

Many urgent issues need to be dealt with in our health services, some of
which are strategic and others local to an area or institution. But decisions
on strategic issues create the framework for the whole system and set the
conditions which allow tragedies like Staffordshire and Cardiff’s University Hospital to occur. These strategic
decisions are political, about the priorities, structure and funding for every
aspect of health, including the balance between prevention and cure, personal
and collective responsibility, or between environmental, societal and medical
factors.

Health is one of many areas where our political system has failed for
decades and Governments have kept people powerless to do much about it, as the
experience of whistle blowers in the health service shows. Our centrally run
health service gives Ministers the illusion of control, so we have had decades
of ‘start-stop and start again’ health reforms which make it very difficult for
people themselves to take part in creating better provision for health.

Successive Governments have grappled with the complexity of preventative
health, primary care, hospitals, nursing, the cost and effectiveness of
medicines, social care, mental health, an ageing population, addiction and
myriad issues that affect our well-being. Since 1974 the NHS has been almost continuously
reorganised in pursuit of better patient care, greater clinical leadership,
devolved responsibility and less bureaucracy. The objectives have been largely
consistent, but Governments have taken us on an expensive rollercoaster,
plunging and twisting through GP Fundholding, Care in the Community, Family
Practitioner Committees, Primary Care Groups, Primary Care Trusts (PCTs) and
now Clinical Commissioning Groups
(CCGs). While some interest
groups (GPs, consultants, dentists) have done well out of this mystery tour,
many others have not, the public is losing out, and the cost is enormous.

The Francis Report will be added to the shelf of recommendations and
another transitory Government will give the NHS another shake. Some improvements
may occur, if we're lucky, but many problems will persist and some will get
worse because political attention and resources are elsewhere: when you turn the
spotlight on one problem, the rest are left in the dark. Some things may get
better due to lack of interference, while others get worse through neglect.

Most battles over health reform are among politicians and the
professionals. The public is rarely involved in difficult debates about how to
balance priorities between prevention, primary care, social care, hospitals or
our £9 billion annual drugs bill(2011), except when mobilised to fight over a particular hospital, treatment
or reorganisation.

Whatever the rhetoric, the public barely has a token voice in how we
look after health as a society and how services are provided. Formal
participation has been channelled through a succession of weak bodies, from
Community Health Councils (1974-2003), Patient Forums (2004-8), LINks (Local
Health Involvement Networks, 2008-2012) and now Local HealthWatch. There is a
tiny amount of public participation through representation on health trusts,
and more active involvement through fundraising, self-help groups, volunteering
and charitable provision such as hospices, but these are largely excluded from
decision-making. In many areas the voluntary sector, PCTs or local councils
have set up forums for health and social care, which can comment on decisions
but are powerless.

The 1974 NHS reorganisation created Joint Consultative Committees (JCCs)
to promote joint planning between health and local authorities, but they did
not have the power to be effective and were abolished. Now the Government is
setting up local Health and Well-Being Boards which will face similar
challenges and even greater financial pressures than those which undermined the
JCCs in 1974 (see Health and wellbeing boards:
system leaders or talking shops?).

When the Coalition Government ran into political difficulty over its
health service reforms, it set up the NHS Future Forum, a group
of health experts led by GP Professor Steve Field, but barely two or three of
its 55 members represented patients or the public. It listened to more than
11,000 people face to face at over 300 events as well as engaging with people
online, but then public involvement stopped. Then it set up theNursing and Care Quality Forum for
another burst of consultation.

But Ministers and Parliament do not have the time or capacity to give
health matters the sustained scrutiny they need, nor to develop the political
framework which balances all the different issues and interests involved in
health and well-being. What we need, therefore, is a permanent “Parliament for
Health” to grapple with these issues in public. A Parliament for Health could
have directly elected representatives (MHPs) or be indirectly elected from
local Health and Well-Being Boards and other stakeholder groups, with a
majority of from civil society, to ensure that the people are in charge of the
professionals, as it should be in a democracy. Part two describes how it could
work in more detail.

If all health-related policy and legislation had been systematically
scrutinised by “Health Parliament”, with a majority of representatives from
patients and the public, feeding
into the democratic processes of Parliament, governments would not have been
able to lurch from one reorganisation to another. Sustained public dialogue
between interest groups involved in health, including the public, is more
likely to have created better patient care, greater clinical leadership,
devolved responsibility, less bureaucracy and greater emphasis on public
health, health promotion and well-being. Problems like those at Staffordshire, Cardiff’s University Hospital, Alder Hey,
the Bristol Royal Infirmary, Great Ormond Street and elsewhere are
much more likely to have been raised by “Health MPs”, listened to and dealt
with than the regulators who have clearly failed.

An effective Health Forum would be more challenging than the countless
consultations, advisory groups and forums run by Whitehall and the NHS, and probably cheaper
to run. It could also be a place where issues are discussed frankly and in
depth, bringing a wider range of knowledge and experience to bear on policy
decisions. It could even make expensive inquiries like Mid Staffordshire, Healthcare for All or the Kennedy inquiry unnecessary, because it
would give people a powerful platform
above the bureaucracies, linked directly to Parliament.

How would a
Parliament for Health work?

A representative National Health Forum within our system of Parliament could
bring together representatives of stakeholders concerned with different aspects
of health, including patient groups, staff, researchers, civil society
organisations and elected representatives from other tiers of government,
including parish and local councillors and MEPs. It could be co-chaired by back
bench members of parliament from health related select committees. In time it
could have directly elected ‘Health Representatives’ as part of a new kind
of second chamber, bringing a wider range of experience and expertise into the
political process. But MPs could set up a “Health Parliament” or Forum now, as
an extension of the select committee to strengthen their oversight of health
matters.

A Parliament for Health should have statutory rights to discuss all
legislation that impacts on their health, to conduct investigations into the
implementation of policy and report directly to the House of Commons through
Member of Parliament (the Co-Chairs). It could have the following tasks:

1.Propose
national priorities in health, for the NHS as well as public health;

2.Hold
the NHS Commissioning Board, Monitor and other strategic health bodies to
account on behalf of Parliament (which should have the final say);

3.Scrutinise
the work of our representatives on the World Health Organisation, EU Council of
Health Ministers, the Food and Agricultural Organisation (FAO) and other
international bodies which influence health;

4.Promote
dialogue round critical issues raised by the Francis Report, the Bristol Royal
Infirmary inquiry and other investigations, and scrutinise their implementation;

5.Recommend
priorities for research and development in health policy and provision;

6.Organise
public consultation on proposals by the Government, taking consultation on
major health matters from the NHS and Whitehall;

7.Pre-legislative
scrutiny of proposed bills before they are presented to the Commons, to draw
attention to health implications

8.Scrutinise
and revise legislation through a “public reading stage” before the second
reading in Parliament;

9.Contribute
to consensus building, where appropriate;

10.Advise
and assist on policy implementation;

11.Monitor
implementation of all policies that affect health;

12.Review and evaluate the impact of
legislation.

Failures in the NHS are symptoms of Parliament's inability to exercise democratic oversight and accountability of health
services. The Health Select Committee does an excellent job, but it does not
have the time to address the vast range of issues and variety of institutions
which make up health provision. A Parliament for Health (or National Health
Policy Forum) could dramatically increase the knowledge and experience to
inform health policy-making. The Forum would be a permanent consultative body,
with part-time members, elected for perhaps seven years, longer than a
Parliament.

To increase public access and participation, most of its work could be
done through a mixture of working groups, open public meetings and online
forums. The whole Forum could meet to conclude a “Public Reading Stage” of
relevant legislation, to discuss major issues like those raised by Mid-Staff Hospital or contentious policy areas
like addiction, obesity or hospital reorganisations.

A Chief Health Inspector may be a useful lightning conductor for
failings in future, but what will make most difference are the hundreds of
thousands of inspectors who go into the NHS every day - patients, their
families and frontline staff. They are also the people who will make most
difference to the health of the nation, in homes, workplaces, shops and streets
as much as in doctors’ surgeries and hospital wards. We are the people who
determine what happens to our health, and we need more democratic
accountability from bottom to top to make sure that health services and support
meet people's needs with care.

If the Government wants to address the deeper issues in health, it needs
to look beyond the institutional matters raised by the Francis Report and give
the public, patients, professionals and researchers a forum to scrutinise
everything that concerns health and wellbeing to support the Select Committee system
and strengthen our Parliamentary democracy and our health.

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